Severe and Enduring Eating Disorders - Another Look

Update:  August 28, 2019
In addition to adding a section on case management and a link to a Team Approach, I have also updated the HIPAA document.   This document explores elements of the full-range of possibilities.   I am attempting to keep this document parent/family oriented or even parent/family/patient oriented rather than clinician oriented.  Early on several adults diagnosed with eating disorders accessed my blog and remarked upon it.  This document is for them, as well.


Overview:  More attention is being paid to adults diagnosed with eating disorders who now are living with chronic illness.  This post takes a look at this development, relevant publications and our family's journey with the goal of providing information for others.

It should be noted that, in general, many with eating disorders whose illness becomes entrenched are also dealing with multiple diagnoses such as depression, anxiety, obsessive-compulsive disorder, bipolar disorder, and borderline personality disorder.   They may have turned to substance abuse and become addicted because no pill exists (yet) to stop the disease.   All aspects need to be treated concurrently.  They may have sought treatment at multiple residential treatment centers over the years and were discharged because they were determined to be non-compliant (one of the key behaviors known to occur in early treatment is rebellion and anger so non-compliance should be expected!) and therefore have given up on treatment, regarding themselves as failures.  They may have needed multiple visits to hospital emergency departments to address electrolyte imbalance or short term hospitalizations over many years to stabilize.  And, their insurance companies may have balked at further treatment expense and/or caused them to be discharged to a lower level too soon.  Or,  their inpatient doctors/psychiatrists have not utilized motivation techniques to persuade them to stay hospitalized and instead, the person demands to be discharged thereby potentially and usually losing the ground they gained while hospitalized.   As a consequence they have many times become poorly motivated, socially isolated, chronically ill, are filled with despair, lack trust that anything might work and have carried on this way for more than 10 or more years.

Anorexia carries the highest death rate of any mental illness.

Where the concept of SEED began:  Several years ago I came across a book authored by Dr. Paul Robinson titled Severe and Enduring Eating Disorder (SEED) - Management of Complex Presentations of Anorexia and Bulimia Nervosa (John Wiley and Sons, 2009).  Because my family member (referred to as FM) at that point had been struggling with anorexia subtype bulimia for about twenty years, I bought it.  FM had just completed yet another course of treatment (this time for more than six months!) and immediately, upon release at a weight, again, above FM's comfort level, stopped eating and over the following year returned to a dangerous pre-admission weight.  I was overwhelmed by despair but held on to the hope that something might be done to interfere with the insidious control of the eating disorder.  Few in the field were focusing on people with a severe long-term eating disorder; in fact, one might justifiably state that they were being neglected, and myths as well as misconceptions  about eating disorders continued to circulate.

Instead, and understandably so, the emphasis was and continues to be on early diagnosis and immediate treatment with the goal of returning the individual to a full, recovered life.  Yet, few understood what eating disorders were all about.

During a relatively short period of time since 2010-11, much has been accomplished in the fields of for example neurobiology, biology/genetics, nutrition and psychiatric care and a plethora of journal articles and books has been published, conferences for both researchers and parents/families/individuals have been held, the internet has helped to speed up the process of dissemination and many more individuals and their families have managed to overwhelm the disease process through early diagnosis and treatment including Family Based Treatment (FBT).

Robinson's book was an excellent first step and remarkably (in the sense of deserving high praise) contains detailed explanations and suggestions re how to treat people who have had the diagnosis of an eating disorder for a very long time.  Dr. Robinson notes that he was the person to coin the classification "Severe and Enduring Eating Disorder" or "SEED" in 2006.  He wrote (p 5) "We have two groups of patients therefore, the acutely ill young patient with a short history of Anorexia Nervosa and not much else and the chronically ill patient with a long history of Anorexia Nervosa with physical, psychological and social complications.  The acronym SEED applies only to the latter."

The Table of Contents partially explains this book's importance to the field and Robinson investigates the topics at length while using patient cases to illustrate his points.

1. Introduction
2. SEED, Psychiatric Considerations
3. Medical Aspects of SEED [this is comprehensive]
4. Social and Occupational Aspects of SEED
5. Family life with SEED
6. Care Programming in SEED [immensely valuable discussion re the role of case management]
7. A Pilot Case Series Using Qualitative and Quantitative Methods: Biological, Psychological and Social Outcome in Severe and Enduring Eating Disorder (Anorexia Nervosa)
8. A Comparison between SEED and Chronic Schizophrenia [to be clear, the point of this chapter is to "use the extensive experience gained in the development of the rehabilitation field in schizophrenia and begin to appy it to SEED" - a remarkable and important step to inspire hope, I think.]
9.  Research Ideas - [this chapter is amazing and includes long lists of ideas to look at related to each chapter discussion and includes a suggestion for a symposium, as well.  The section on care or Care Program Approach - CPA - is quite useful.]

Our Family's Experience:  In retrospect, FM finally had had the advantage of a multifaceted team [there is a link to a post about team composition and roles later in this post] from one of the mental health services here that addressed many of these points and wonderfully, at the same time, the team was  welcomed by the residential treatment centers (2009 and beyond except for the State hospital in 2012) at which FM was a patient so all could work together to overcome FM's already entrenched behaviors.  I wrote of my experiences and of the knowledge I had gained in posts here on my blog (and have continued to update them).

In 2015, after FM once in 2012 had been court ordered and placed for almost a year in the state hospital as a last gasp measure to literally keep FM alive and from which FM emerged having gained enough weight to take advantage of services but over the next two years and ongoing has been unwilling to do so, I came across the open access  editorial/article written by Drs. Stephen Touyz and Phillipa Hay titled "Severe and enduring anorexia nervosa (SE-AN): in search of a new paradigm" that appeared in the Journal of Eating Disorders (2015) 3:26.  The authors note, "We need to rethink our treatment strategies by drawing upon the patient's strengths and competencies rather than merely paying attention to what is 'wrong with them'." 

I also attended a conference on eating disorders at UCSD in 2016  (also described in a post listed in the Index) that brought me up to date on much of the research being done and new avenues of therapy.  I shared much of this information with the lead doctor at the time (who was very knowledgeable about eating disorders) at University Medical Center Banner Behavioral Health South and with FM's mental health service psychiatrist, as well.

Since then, also in 2016, I took on the role of Court Appointed Legal Guardian with mental health authority on the advice of FM's team psychiatrist in order to help FM with FM's desire to sustain life and have worked closely with the psychiatrist and with FM's PCP in order to do that.  My previous post re Emergency Department visits reflects only part of this journey.  I have never lost the sense of hope.  This effort has been all-consuming yet from a carer perspective, I've also steadily sought the help of a therapist who has coached me to seek outside activities and to maintain healthy relationships with others including my husband, extended family, and friends.  Her assistance has been exemplary.  Here's a link to ideas for self-care.

FEAST SEED Focus:  Not one to give up, on March 17, 2019, I attended a one-day family members conference titled "Feast of Knowledge" scheduled by F.E.A.S.T. to follow the annual International Conference of Eating Disorders (ICED) held in New York City.  Several presenters at ICED came to provide summaries of their presentations.  During the discussion, the concept of severe and enduring eating disorders was discussed and I offered to initiate a discussion that will hopefully generate a usable body of knowledge - perhaps even a pamphlet - to help families whose loved one has struggled for a long time.  This project is now underway and I have contributed this post.  There hopefully will be a link to stories written by family members and those either in recovery or working towards recovery.  I am unable to participate in this project at this time because my family member again is losing ground because she again was discharged too soon at too low a weight.

Having read several papers, I am arbitrarily suggesting that a long time (enduring) be defined as more than 10 years of ongoing treatment.  Others suggest 7 years.  I began my blogging at the marker of 20 years in FM's case.  As is outlined in the first paper of Managing Severe and Enduring Anorexia Nervosa - A Clinician's Guide (see below for the reference) titled "What Do We Know About Severe and Enduring Anorexia?" by Anna C. Ciao, Erin C. Accurso, and Stephen A. Wonderlich, defining SE-AN or SE-ED continues to be an issue.

Blog Linked Resources re Anorexia in Adults:  Here are some resources with suggestions to continue that conversation building on what I have posted on my blog previously and learned as time has gone on (and provided links to above and in the Index of my Posts).   I recommend a look at:
First Steps if you suspect your loved one has an eating disorder;
Tips for Parents of Adults with an ED; and
Team Approach - A suggested way to keep recovery going. This provides the reader with suggestions for team members.
You may also find the post Financial: how/where to get help to pay for treatment helpful as well as the posts about a
recovery coach  and, importantly,
HIPAA and your right to call your loved one's treatment provider, ask to speak with her/him and state you would like to share what you believe is important information about your loved one.  More details are in the HIPAA document.

As I have noted on my blog, "This site is only for informational purposes.  Posts do not represent medical advice.  Readers should not base any personal medical decision on information posted on this site.  Any health concerns should be discussed with your personal physician, psychiatrist, or therapist."

Recently Dr. Jennifer L. Gaudiani published her book Sick Enough: A guide to the Medical Complications of Eating Disorders (Routledge, 2019).  From the book's cover:  "Patients with eating disorders frequently feel that they aren't "sick enough" to merit treatment, despite medical problems that are both measurable and unmeasurable.  They may struggle to accept rest, nutrition, and a team to help them move toward recovery.  Sick Enough offers patients, their families, and clinicians a comprehensive, accessible review of the medical issues that arise from eating disorders by bringing relatable case presentations and a scientifically sound, engaging style to the topic.  Using metaphor and patient-centered language, Dr. Gaudiani aims to improve medical diagnosis and treatment, motivate recovery, and validate the lived experiences of individuals of all body shapes and sizes, while firmly rejecting dieting culture.  Dr. Gaudiani is a board-certified internal medicine physician, known nationally and internationally for her work on the medical complications of eating disorders...." 

FM and FM's PCP at El Rio Medical Center have read this book cover to cover.  I learned last week that others within the PCP's extensive practice are also reading it.  I have distributed copies of this book to the local Tucson  Crisis Response  Center, to social workers and psychiatrists at University Medical Center Banner South campus and to all members FM's treatment team. 

I believe this book should be required reading as part of the curriculum for all medical students, especially those who go on to psychiatric practice, for this knowledge and what goes on in the minds of those with eating disorders is not understood by many in the field here in Tucson nor is adequate treatment available here, either, especially for those with long-term eating disorders.

In addition, BioMed Central provided, in 2017, open access to several articles relevant to the discussion of SEED.  These include the original editorial written by Dr. Stephen Touyz and Phillipa Hay mentioned above and linked in the "Of Note" section of my blog and also articles and reviews titled (see the link also in the "of Note" section for full acknowledgements) Examining a staging model for anorexia nervosa: empirical exploration of a four stage model of severity; Applying neurobiology to the treatment of adults with anorexia nervosa;  Neurobiological Model of the persistence of anorexia nervosa, Case Management at an outpatient unit for severe and enduring eating disorder patients at Stockholm Centre for Eating Disorders - a study protocol; Avoid hospitalization for severe and enduring anorexia nervosa by personalizing your care; Listening in the dark: why we need stories of people living with severe and enduring anorexia nervosa; Predictors of therapeutic alliance in two treatments for adults with severe and enduring anorexia nervosa.  

One of our keynote presenters during the F.E.A.S.T. of Knowledge conference in March 2019 was Laura Hill. Ph.D., LLC, Assistant Clinical Professor, Department of Psychiatry, The Ohio State University, and formerly with the Center for Balanced Living.  The research article "Applying Neurobiology to the treatment of adults with anorexia nervosa" that she co-authored with Stephanie Knatz Peck, Christina E. Wierenga and Walter H. Kaye (also present at the conference) describes the treatment written about by Carrie Arnold titled and linked here  "Treatment for Adults: A Grown-up approach to treating anorexia."

Neurobiological Approach: While the concept of staging I believe is beneficial for the overall understanding of eating disorders, I believe family members may be looking for more specific tools and the why behind the tools.   Using neurobiological descriptions to explain treatment, the role and value of case management, the role and value of treatment modalities, and discussions about how to increase trust and build a therapeutic alliance between and among a person's team members would seem of great value not only to the patient and his/her family members but also to the team members as well as professionals treating the person in a medical and/or psychiatric setting.

The neurobiological aspects of eating disorders are being researched heavily.  We have learned that the brain can learn new behaviors - literally rewire to shift neural pathways that are sort of like roads in the brain leading to certain behaviors.  The goal is to override learned habits and substitute new ones.   This can be done!!!!!

In May of this year, Tabitha Farrar published a second book titled Neural Rewiring for Eating Disorder Recover: for real and meaningful mental freedom.  See below regarding her first book along with a link to her blog.  She is a recovery coach.  I personally endorse this book because I know from my own recovery experience that re-wiring as she explains the process is critical to recovery.  Re-nourishment is only part of the process and re-wiring takes longer.

Care Planning:  Robinson addresses "Care Planning" [Chapter 6, p. 95].  His view of  a "care manager" and their role is very important.  I address this at length at this link.  This role can be filled by a parent, especially for those working with a therapist trained in FBT, who continue to have the energy and are building knowledge about eating disorders and how to help their loved one get into recovery.  For adults diagnosed with a long-term eating disorder and for their family members, I am recommending that they and  those in the field of eating disorders as well as insurance companies explore the possibility of hiring (and having insurance pay for) a professional case manager, perhaps one who is a psychiatric social worker with extensive clinical eating disorder training.  Those of us, like myself, who are now in their late 60's or 70's, may need help.

Palliative Care:  Sometimes, especially when our loved ones adamantly quit trying, the subject  of palliative care comes up.  As Allan S. Kaplan and Amy Miles note in their paper titled "The Role of Palliative Care in Severe and Enduring Anorexia Nervosa" published in the Touyz, Le Grange, Lacy and Hay volume, Section 14, it is important to get beyond the early definition and to this instead:  "...However, as the palliative care movement has developed, so too has its scope.  As conceived today, palliative care encompasses the provision of multimodal, highly personalized treatment designed to improve quality of life when symptom-based approaches have proved ineffective or otherwise undesirable."  Some are learning to live with their illness rather than continue to fight it.
Also take a look at the article "Eating Disorders and Palliative Care" linked below in the resources section.

Dr. Gaudiani, in Part V - Specific Populations also brings relevant discussions to this conversation about SEED with the topics, "Older Patients","Substance Use Disorder", and, critically, "Caring for the Patient Who Declines Treatment: The Spectrum from Mandated treatment to Hospice Care "(pp. 220-242).

As a skilled therapist once told me, "Hope for the best yet prepare for the worst."  Remember, some have recovered.  It is possible.

On that note, Managing Severe and Enduring Anorexia Nervosa - a Clinician's Guide includes, Document 17 pp. 273-285, an essay by June Alexander who introduces herself by saying "I regained by self from anorexia nervosa (AN) in 2006, 44 years after developing the illness.  My story adds to the pile of evidence that recovery can be achieved at any age...."

Resources listed include:

Sick Enough: A Guide to the Medical Complications of Eating Disorders by Jennifer L. Gaudiani, MD, CEDS, FAED, Routledge, NY, 2019

Managing Severe and Enduring Anorexia Nervosa - A Clinician's Guide edited by Stephen Touyz, Daniel Le Grange, J. Hubert Lacy and Phillipa Hay (Routledge, 2016)

"Eating Disorders and Palliative Care" by Patricia Westmoreland, MD and Philip S. Mehler, MC, FACP, FAED, CEDS published in the Gurze-Salucore Eating Disorders Resource Catalogue, January 27, 2019.

Tabitha Farrar, a recovery coach, has recently published Rehabilitate, Rewire, Recover! - Anorexia recovery for the determined adult.  I am reading this now.  For more information about Tabitha Farrar, her coaching, her valuable podcasts, and her book go to this link.  As noted above, she has just published a second much shorter book titled Neural Rewiring for Eating Disorder Recovery: for real and meaningful mental freedom.  This is not a quick fix.  The process takes work.

Kathryn Hansen published Brain Over Binge - Why I was Bulimic, Why Conventional Therapy Didn't Work, and How I Recovered for Good.  I discovered this book while taking a psychology course offered by the University of Arizona's Humanities Series that included neurobiological aspects of the brain.  Since I, too, am in recovery for more than 40 years from anorexia/bulimia, I read the book and believe it offers a possible useful course of action for some mired in this diagnosis.  Here's a link to a review I wrote.

And, remember, Food is Medicine.  The recent (Routledge, 2018) book How to Nourish Your Child Through an Eating Disorder - A Simple, Plate-by-Plate Approach to Rebuilding a Healthy Relationship with Food by Casey Crosbie, RD, CSSD and Wendy Sterling, MS, RD, CSSD will help.  FM who has had countless sessions with nutritionists over the years has been using and recommends this volume.

This post will continue to include newly discovered resources and other contacts.

Treatment for Adults: A Grown-Up Approach to Treating Anorexia by Carrie Arnold published in Mosaic Science 3/29/2016

I am very excited to share this article that was published today by Mosaic Science (3/29/2016) along with the ability and HTML text to republish it here. By going to the link I have provided above, readers can also pick up the article, share it on Facebook,  email it to friends and colleagues and even email it to their favorite publications. Finding appropriate treatment for an adult with anorexia is difficult. Getting it is even harder. So much information is in here including historical background, the latest understanding about this disorder, what happens in the brain of those with this disorder, how this disease affects the behavior of those with this disorder, and so forth. Embedded in the article are important links including Carrie Arnold's personal experience with anorexia (How I Manage My Eating Disorder). Carrie Arnold reveals what I, as a person who is in recovery from anorexia (first) and bulimia (later) for more than almost 40 years know: that is, the tendencies continue to be there due to genetics and environmental triggers. Understanding what is going on is an important clue and motivator to want to pursue recovery. This article by Carrie Arnold and the work of Dr. Walter Kaye and Laura Hill, PhD, opens that door.

************

Heather Purdin had run out of options. Aged 33, she had been suffering from anorexia nervosa for more than two decades and her weight had plummeted to that of a small child, an all-time low for her. Her case worker, out of frustration and desperation, suggested hospice care as a way to spend her remaining days in relative comfort. But for the first time in years, Heather was sure of one thing: she desperately wanted to live.

Treating anorexia, which is characterised by self-starvation and an inability to maintain an adequate body weight, seems absurdly simple on the surface: just eat and gain weight. It’s something Heather and the millions of others afflicted by eating disorders have heard countless times. The problem is that it’s never that simple. Heather has long since lost track of the number of times she has been admitted to hospital for low body weight, electrolyte imbalances caused by starvation or self-induced vomiting, or thoughts of suicide. In hospital she gains weight, but as soon as she is discharged she promptly returns to her old ways and loses what little weight she has gained. And so for more than 20 years, she has remained hopelessly, incurably, stuck.

Up to one in five people with chronic anorexia may die as a result of their illness, either due to the direct effects of starvation and malnutrition or due to suicide, making it the deadliest of all psychiatric disorders. Although scientists have made tremendous progress in decoding the underlying biology of eating disorders and in finding ways to intervene in cases of teenage anorexia before the disorder becomes chronic, this hasn’t translated into effective treatments for adults like Heather.

A chance posting on Facebook last fall, however, brought Heather the first breath of hope she had felt in years. In Ohio, there was an experimental five-day intensive programme to help adults with anorexia. What made this one different was that it used the latest neurobiology research to mould its goals as well as how its treatment was delivered. And since research confirms that most patients struggle to make changes to their entrenched behaviours on their own, patients also had to invite up to four support people to join them on the residential programme. Heather asked her father and her sister, and began raising the funds to fly them all to Ohio.

“I need this to work,” she said. “I have nothing else to try.”

Despite its reputation as a quintessentially modern disorder, anorexia is nothing new. Historians believe that many of the ‘fasting saints’ of the Middle Ages had anorexia. The first medical report of the illness appeared in 1689, written by London physician Richard Morton, who described it as “a Nervous Consumption” caused by “Sadness and anxious Cares”.

Even as recently as the 1970s, anorexia remained something of a clinical oddity – a disease that doctors rarely saw, let alone had a clue how to treat. When psychologist Laura Hill saw her first anorexia patient at a university counselling centre back in 1979, she had never even heard of the disorder: “Her father was in the science department there and I had to ask him what anorexia was,” recalls Hill. “He told me she was unable to gain weight, afraid of food.”

Rates of anorexia had been steadily climbing since the 1950s, but it wasn’t until the death of singer Karen Carpenter in 1983 that the disorder became a household word. She died from heart failure due to anorexia nervosa, and all of a sudden newspaper stories and after-school TV specials began to feature teenage girls “dying to be thin”. Besides highlighting the spectacle of a healthy, attractive young girl’s determination to starve herself, the storylines usually focused on the family dysfunction that psychologists believed lay at the heart of the disorder. Parents were told not to be the food police, that anorexia was a misguided search for control. Only when they let their child be fully in control of their own life would the anorexia resolve.

Psychiatrist Walter Kaye wasn’t convinced. Despite not having done research into eating disorders before, he had been asked to help finish an anorexia study for the US National Institutes of Health in the early 1980s. While talking with the participants, he noticed something unusual.

“I was just kind of struck by how homogenous the symptoms were,” he says. Because the patients seemed so similar in terms of symptoms and temperament, he believed there had to be something in their biology that was causing anorexia – and he dedicated himself to finding out what it was.
In the early 1980s, anorexia had been seen by the medical community as a deliberate decision by a petulant teenage girl: she was selfish, vain, wilful. Since she had chosen to become ill, she simply needed to choose to get better. She needed to become a fully formed individual, to separate from her family and rebel against the cultural ideal of thinness at all costs.

How I manage my eating disorder

Scientific research by Kaye and others, however, exploded every aspect of this stereotype (not least that anorexia only affects girls) and completely changed how we think about the condition. Psychologists like Laura Hill had to rethink their whole approach: “Many times, I want to call up all my old patients and apologise for getting so much backwards,” she says.

Hill began to keep a file full of notes about what she thought was causing anorexia, what her patients believed, what seemed to work and what didn’t. After a few years, she entered a PhD programme to better help her patients. But even with several research articles to her name and, ultimately, decades working at the forefront of treating and researching eating disorders, she realised that the treatment advances weren’t reaching adults with anorexia. She wasn’t the only one. Across the field, psychologists, psychiatrists and dietitians have noted that treatment outcomes for adults with anorexia remain abysmally low. Less than half recover fully, another third show some improvement, but the rest remain chronically ill.

“They go for many years, and they’ve relapsed over and over again, and they have the highest risk of dying,” says Kaye. “I think all of us are feeling that this is a serious, often deadly disorder for these people, and we don’t have good approaches, and we don’t understand enough about the causes.”

For adolescents with anorexia, a ground-breaking treatment developed at the Maudsley Hospital in London in the 1980s called family-based treatment (FBT) has significantly improved short-term recovery outcomes. It puts parents temporarily in charge of making food and exercise decisions for their child and places a priority on normalising weight and eating habits. In a randomised clinical trial published in 2010, around half of teens treated with FBT met criteria for full recovery after a year, compared to 23 per cent of teens receiving standard treatment.

Nothing has been remotely that successful for adults with anorexia, and there’s no easy explanation as to why. One reason may be that adults have simply been sicker for longer, says Angela Guarda, Director of the Eating Disorders Program at Johns Hopkins University: “The longer you have anorexia, the more anorexia creates physiological changes in the body and the brain that then create a self-sustaining cycle. You do it today because you did it yesterday, no longer because you decided to go on the Atkins diet when you were 15 or because your coach said something to you or you broke up with a boyfriend and you decided to lose weight. It’s no longer about that.”

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As well, many people with anorexia don’t grasp that they are, in fact, sick. While parents generally sign their children into treatment, that power vanishes when the child turns 18. Adult patients can also stop treatment if it gets too difficult – and it often does, because challenging the behaviours associated with eating disorders can create tidal waves of anxiety. A long-term, chronic eating disorder often ends up alienating friends and family, the very people who tend to push their ill loved one into treatment and support them through the recovery process.

Clinicians, like their patients, are desperate for something better, some way not only to help adults with anorexia normalise their eating and gain weight, but also to help them stay well. “In anorexia, you get their weight up and they go home straight from inpatient [where] they’re fed from a tray, and they’re expected to know how to eat in a restaurant, eat in a cafeteria, eat in social settings, when they haven’t been eating with anyone for a decade,” Guarda says.

On a warm spring weekend in 2006, Laura Hill stopped in the middle of mowing her lawn. She had spent the morning reading one of Walter Kaye’s articles on the neurobiology of anorexia, and was familiar with how Kaye and his colleague Stephanie Knatz were beginning to use neurobiology in designing new treatments for adolescents. It occurred to Hill that she could do something similar for her adult patients.

She dashed inside to grab a pad of paper and a pencil, where she scribbled a few notes before returning to her lawn. Several passes later, she had another insight and again stopped mowing to add to her notes. This went on all afternoon. It took until dusk to finish the mowing, but by then, as well as a neatly cut lawn, Hill also had the outline of a new type of adult anorexia treatment that would harness the strengths of people with the disorder and try to compensate for their weaknesses.

She continued to work on the outline, asking her patients at the Center for Balanced Living in Ohio for input on what they found helpful. A few years later, she teamed up with Kaye and Knatz, who further refined the idea based on their experiences at the University of California, San Diego. There, they had had remarkable success with a five-day intensive FBT programme for adolescents. Rather than seeing someone once a week, which might not be enough to be effective, or taking them away from their family and putting them in an artificial environment for a residential programme, they had insisted that the family come and stay too. Encouragingly, some young adults – living at home or supported by their parents – had also taken part, suggesting that this format could work with an older crowd as well.

“As opposed to having people step in for an hour and talk about what happened over the week, we’re actually seeing what happens live, in vivo. That gives us the possibility to intervene in vivo, as opposed to coaching people on what they should do ‘when circumstances come up’,” says Knatz.

In 2013, Hill, Knatz and Kaye applied for a grant from the US National Eating Disorders Association to fund a pilot study of what they called Neurobiologically Enhanced With Family/Friends Eating Disorder Trait Response (NEW FED TR). Every aspect of the programme was based on what researchers understood about what happens in the brain of someone with anorexia, the goal being not just to improve treatment but also to reduce blame and guilt among sufferers and families. To that end, NEW FED TR would involve care givers and loved ones as an integral part of treatment, creating a team that could work to fight the eating disorder together. Responsibility for recovery would remain firmly in each client’s hands, but some aspects of recovery that tend to be sticking points for adults with anorexia could be outsourced to their support people as needed.

On an unusually mild Monday morning in December 2015, Heather Purdin was fiddling with the ponytail securing her dark brown hair, just as she always does when she’s nervous. It was a short drive from the hotel, across the freeway interchange to the back of a wooded business park. Her body mass index (BMI) was very low now – all muscle and softness stripped from her body, leaving only sinew and bone. A baggy shirt and scarf couldn’t conceal how ill she was. But she was not on her way to a hospital or a hospice. Flanked by her father, sister and best friend, she entered the Center for Balanced Living to take her place on the successfully funded pilot of the NEW FED TR programme. And despite all her fears, a giant grin lit up her face.

It looks like any other kitchen. Long, grey countertops line one wall and an island; there’s a large stove, a sink and a fridge. Beau Barley, a tall, thin 20-year-old with bleached blond hair and a two-day-old beard, is cooking an omelette for breakfast while his parents prepare their own meals. It could be breakfast at any home in America, except that Beau is at the Center for Balanced Living, on his second day of the NEW FED TR programme.

“Okay, clients, check in with your supports to make sure you’ve got enough to eat,” calls the programme’s dietitian, Sonja Stotz. She listens in as Beau shows his meal of eggs, toast, butter, milk and fruit to his parents.

Like around half of those with anorexia, Beau suffered from obsessive–compulsive disorder (OCD) as a child, having to turn off lights in a certain way and avoid all the cracks on the sidewalk. Every time he heard a siren, he had to call his mom because he thought she had been in an accident because he didn’t do one of his rituals right.

Always sporty, his anorexia started with a simple desire to be a better runner on his high school cross-country team. He amped up his mileage, running longer and longer each day and eventually training year-round. The sport he loved became a compulsion. But overtraining eventually took a toll and he was sidelined by a severe stress fracture. His only thought as his leg was being X-rayed in the hospital was that he needed to cut back on his food if he wanted to stay in shape for next season. As his mother pushed him out of the emergency room in a wheelchair, she asked him what he wanted for dinner. “A salad,” he replied.

From there, Beau became more and more obsessed with eating ‘healthy’ and returning to running. At first, his weight was stable. But as his running obsession returned, his metabolism kicked in. Always somewhat slender, his weight plummeted. In the summer before he started university, he went through his first formal treatment programme at the Center for Balanced Living, attending group therapy during the day, eating his meals at the centre and returning home every night. Things started to look up, but Beau relapsed during his first year at university. Over the past summer and fall, he has tried to make progress against his eating disorder, but the exercise compulsion is cemented in place. When his mother called the centre to see if he could return, they recommended NEW FED TR. Beau eagerly signed up and now here he is, showing his parents what he has cooked for himself this morning.

“Are those all your exchanges?” his mother asks. NEW FED TR uses a meal plan that assigns each individual a certain number of choices or ‘exchanges’ from each food group for every meal and snack.

He indicates that it is, telling her how the food on his plate adds up to his prescribed meal. Satisfied with his choices, Stotz moves on to assist one of the three other families in the kitchen. Beau’s family sit down at the table and, as breakfast begins, Hill and Stotz suggest fun games to play as a distraction, to decrease the anxiety all of the clients feel around eating. The less anxiety they feel, the more likely they are to successfully complete the meal, which serves as their medication.
Stotz points out that her job is selling her patients on the idea that they need to eat more and exercise less, the very opposite of what most dietitians do. “I should go into sales,” she laughs.

In the morning sessions, Hill gives the clients and their families a crash course on eating disorder neurobiology. Eating disorders typically begin in adolescence, and anorexia is no different. Although the exact circumstances that trigger the onset of anorexia aren’t clear, nearly all cases begin when a person fails to meet their energy needs, placing them in a state of what researchers call negative energy balance – burning more calories than they eat. For some, a weight-loss diet precipitates the eating disorder; for others, it’s increased sports training, a growth spurt, an illness, decreased appetite from stress, even new braces.

For most people, being in a negative energy balance is profoundly uncomfortable. That’s why dieting often makes people impulsive and cranky, ‘hangry’ even. But those with a predisposition for anorexia have a completely different experience. Starvation makes them feel better.

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Kaye’s work with women who have recovered from anorexia nervosa found unusually high levels of the neurotransmitter serotonin in the cerebrospinal fluid that bathes the brain, and he believes these levels were likely also present before the onset of anorexia. Although low serotonin levels are linked to depression, high serotonin levels aren’t good either, as they create a state of chronic anxiety and irritability. As many as three-quarters of those with anorexia had suffered from an anxiety disorder before their eating disorder began, most commonly social anxiety and OCD. It is this anxiety that Kaye believes makes some people much more vulnerable to anorexia.

The body synthesises serotonin from the amino acid tryptophan, which we get from our diet. Eat less food and you get less tryptophan and hence less serotonin. For people predisposed to anorexia, therefore, starvation reduces the anxiety and irritability associated with their high serotonin levels. Mission accomplished, or so it seems. The problem is that the brain fights back, increasing the number of receptors for serotonin to wring every last drop out of the neurotransmitter that is there. This increased sensitivity means that the old negative feelings return, which drives the person to cut back even more on what they’re eating. Any attempts to return to normal eating patterns wind up flooding the hypersensitive brain with a surge of serotonin, creating panic, rage and emotional instability. Anorexia has, in effect, locked itself into place.

Heather Purdin and her team see this first-hand as Hill asks the different groups of clients and supports to use yarn, taken from Hill’s massive collection of weaving supplies, to wind the client’s hands into place. Heather’s team rapidly pin her hands and arms in front of her face. This, Hill says, is the anorexia in action. Heather is now as stuck physically as she is mentally. Getting her functioning again means weaving her supports into her mental ‘loom’. Here is where the team struggle, especially when Hill asks Heather what she is going to do differently. In sheer frustration, she slams her knotted hands onto the table in front of her
.
“It’s not working,” she wails. “I can’t change.”

The tears start and it doesn’t seem they will ever stop. It is, however, her lightbulb moment.
“I realised I wasn’t completely crazy,” Heather says later. “It was a huge relief. It is real and I’m not making it up and I’m not a complete loser.”

Recovering from anorexia, Hill says, is like learning to navigate around landmines. They can be deadly, and they can derail recovery. One of the biggest struggles for people with anorexia is making decisions: a first-year university student on the programme, who asked not to be named, admits that she can stand in front of the fridge for hours trying to decide what to have for lunch. Frustrated, she often shuts the door without eating anything.

Hill rounds everyone up and asks them to toss their treatment binders into the centre of the room. One by one, the clients are asked to close their eyes and walk across the room without bumping into anything. Not surprisingly, no one can do it. But when they ask a family member to guide them, they get safely to the other side. In real life, this could mean the university student asking one of her parents to pack her lunch for her if she becomes too anxious to make a healthy decision.

“People with eating disorders have many amazing qualities, and like anything it has both positives and negatives,” says Hill. The goal of the programme is to make these traits work for an individual as much as possible, and to enlist loved ones to fill in for the parts of the brain that might not be working properly.

The exact details of this are hammered out by each family throughout the week in the Recovery Support Agreement. Skipping meals or snacks or not gaining weight as appropriate could result in consequences that are agreed in advance, like leaving university or eating more meals with supports.
“It’s helpful for people with anorexia because they like rules, they like structure, they don’t like the unknown, so they have a pretty good idea of what’s going to happen if they’re not able to eat and gain weight. And our data is suggesting that may be a useful approach,” says Kaye.

A 2003 study identified five personality traits that increased the risk of developing an eating disorder: perfectionism, inflexibility, having to follow the rules, excessive doubt and caution, and a drive for order and symmetry. Other studies have found links between anxiety, perfectionism and anorexia. Adults with anorexia get stuck on details and have trouble zooming out to see the big picture, which can make it difficult to make decisions. As well, they have difficulty mentally switching from one task to the next.

For too long, says Hill, eating disorder professionals have been focusing on these traits as weaknesses when that’s not true. To succeed at scientific research, for instance, obsessionality and attention to detail is almost a must. Since people with anorexia use rules and routines to ‘succeed’ at their eating disorder, they can also learn to use them to succeed at recovery. It sounds like a small shift, but for anorexia sufferers like Heather and Beau, it makes all the difference in the world.

“Make your quirks work,” Heather quips with a smile.

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“Ew, don’t eat that,” says the mother of the first-year university student. She isn’t providing feedback at mealtime now but playing the role of the insula, a region of the brain that is sensitive to disgust. Other participants role-play other regions in a re-enactment of how the brain makes decisions around food.

In healthy individuals, determining what and how much to eat is controlled by a variety of factors, including what’s available, how much it’s liked and how hungry the person is. Not so in anorexia. Kaye’s work using functional magnetic resonance imaging (fMRI) of the brain has teased out other important details. Unlike most people, whose brains respond strongly to rewarding things such as sweets, people with anorexia are generally far more sensitive to punishment (the removal of something pleasant) than reward.

Another study found that the brains of women who had recovered from anorexia responded significantly less to sugar water than healthy controls, and they found sweets less rewarding when hungry. Kaye says these results may indicate how they are able to continue starving even while food is plentiful, since people with anorexia find food less rewarding and thus have less motivation to eat. Tests also showed a preoccupation with future harm at the expense of what might be needed in the present moment.

“One reason that people with anorexia are able to starve themselves is that when they get hungry, the parts of the brain that should be driving reward and motivation just aren’t getting activated,” he says.
So when it’s time to role-play the ‘anorexia brain’ considering whether or not to take a bite of banana, those people playing brain regions responsible for reward (the feeling of ‘yum!’ when you eat a piece of chocolate cake) are quiet, while the brain areas responsible for worry kick into overdrive. The result is that no one in the room can hear the small, quiet part of the brain telling the person with anorexia it is okay to eat the banana.

Hill plays an audio recording of one of her former patients re-enacting the anorexic thoughts that tormented her while she ate – it is an endless stream of “I can’t eat this. I’m going to get fat. I’m ugly. I’m disgusting. I’m weak. I hate myself. I can’t do this. I’m so pathetic, just pathetic, a weak pig.” It goes on for more than ten minutes.

Parents, many of whom had walked into the programme frustrated and angry at their child’s seeming refusal to eat, hear the recording and the sheer amount of ‘noise’ that their children endure and their anger dissipates.

“I get it now,” Beau’s mom says, dabbing at her eyes with a tissue. “I get it.”

Heather’s week at the NEW FED TR programme has been life-altering: “For the first time, someone got what I had been saying all along, that I had a biologically based brain disorder,” she says. “They worked with me instead of against me.”

By December 2015, nearly 25 families had participated in NEW FED TR, and more pilot groups are in the works. Feedback, Hill says, has been uniformly positive, even from those with anorexia – pretty rare for a treatment programme that requires a person to face their deepest fears six times a day, eating three meals and three snacks. It’s too soon to say whether the programme has been effective in helping adult anorexia sufferers move towards recovery, but for Heather it marks the first time she has actually believed in her own ability to get better.

For the first time in 20 years, she says simply, “I have hope.” And with that, she heads to Trader Joe’s to buy ingredients for a Christmas feast she is hosting for friends and family. It would have been unimaginable last year, but now she hopes it will become a tradition that will continue for a very long time.

This article first appeared on Mosaic and is republished here under a Creative Commons licence.

Progress re Treatment of Eating Disorders?

[So excited to note here at the top of this post the March Against ED on September 30, 2014 in Washington, DC.  This event has united so many organizations intent on bringing attention to this biologically based illness.  For more information go to this link.   AND, watch the video!! ]

The September 2014 issue of the International Journal of Eating Disorders (Volume 47, Issue 6) arrived in my mailbox yesterday.  As usual, I quickly browsed the contents.  I was so struck by the similarity of themes - meaning much work needs to be done - between the quote I provided in 2010 after attending the NEDA conference, and the Abstract of the first article, "The Therapeutic Process in Psychological Treatments for Eating Disorders: A Systematic Review" by Anne Brauhardt, Martina de Swaan, and Anja Hilbert, especially the Discussion, that I highlighted some of the information in the latter as another lead-in quote to my blog.

Much progress has been made in the understanding of the importance of Family Based Treatment (FBT), of the care and nutrition needs early on in treatment of the person with the eating disorder, of the integral part family dynamics (by family I mean the primary social environment of the person) plays as well as of the role of one's environment and especially of genetics and the understanding of the workings/treatment of the brain.

Yet because eating disorders remain one of the most difficult to treat of all brain based illnesses, so much more work needs to be done and all involved in the field including the organizations supporting the dissemination of information need to work together to help those diagnosed with this range of illnesses.  Currently, I believe there remains too much ignorance as well as an attitude of "this way is better than that way" and the only way the community is going to get around these hurdles is by keeping an open mind as well as staying current with the literature and accepting that perhaps their in many cases limited and self-serving approach is detrimental to helping people get into recovery.

I realize my statements may raise hackles yet I continue to note that the agendas (speakers and their topics) of some sessions still seem to ignore - discount? - what is happening in other areas.  I hope this situation will change.  I have added the blog created by Averil Hart's family to emphasize the importance of knowledge and change in the treatment of eating disorders.

Meanwhile, as I've noted in my header, I will be slowly reorganizing my blog and updating where I can to provide a useful resource for parents, especially parents of adults with eating disorders.  I am encouraged to see lately that more emphasis is being placed on how to treat adults and therefore what might work to help them become motivated to change - a wonderful and important development.

Eating Disorder Recovery is a Process/ED Treatment Must Be As Well

Among all the messages coming at the public in the media this week are those focused on eating disorders, thanks to the growing initiative known as Eating Disorders Awareness Week.  Some of the messages are personal; i.e. they are stories.  Stories tend to grab attention as many of us know which is why the Eating Disorders Coalition has worked so hard to create the means for families to tell their stories to legislators on Capitol Hill.

This work extends beyond Washington, DC to individual states like Arizona where yesterday, Senator Katie Hobbs introduced a resolution to our Legislature.  Here's her resolution:

Yet stories present "just" one perspective on a disease that we know now is biologically based and that research is revealing appears for reasons that aren't quite understood.  So, to educate the public somehow these stories in the media especially this week need to be couched in a constantly updated base of information about eating disorders.  Some pieces are introduced with that kind of information; others are not.  Some continue to highlight the relationship between mother and daughter/son in ways that can be interpreted as blaming.  The media needs to get beyond this blaming message by improving the message and one of the ways the media can do that is by introducing the story with, perhaps, a few sentences that emphasize that eating disorders are, in fact, biologically based illnesses.  The how remains the question and many are working on a solution including organizations like F.E.A.S.T., NEDA, ANAD, NAMI and others as well as dedicated researchers.

Yet this is only part of the entire picture.  The other part is the necessary acceptance by all concerned -- parents, the medical establishment, insurance companies, the legislature, and the individual herself/himself who may or may not be aware of their role in getting well -- that recovery is a process and not just dependent on one stay in a residential facility or a several months-long effort on the part of a team including the family.  Many of us have learned that the potential for the reappearance of the illness may be a life long tendency. 

In addition, the recovery process depends on the Establishment's/the public's awareness that treatment of eating disorders must be carried on in the same way that treatment is provided for other biological illnesses.  So, for example, a person with diabetes or multiple sclerosis gets on-going treatment covered by insurance (one hopes and that's another topic) and monitored on an ongoing basis, as well.

This is not as simple as it looks.  Those with illnesses like diabetes can monitor their own illnesses through daily tests and periodic doctor's visits.  The treatment of eating disorders, because they aren't well understood yet, isn't as easily defined.  And often, the brains (thinking processes) of those with eating disorders are so compromised that they are unable to monitor their "state".  So, a system needs to be put in place for this illness that provides ongoing coverage by insurance so that anytime a person with this illness falters, s/he can return to more intensive treatment to get back on track without having to jump through hoops to get it.

In other words, the door to treatment for eating disorders must remain open and methods of treatment (both physical and psychological) must remain flexible to address that person's changing needs since this disease affects people of all ages.  All too often doors are slammed shut without alternatives provided.  This situation must change, especially for those whose eating disorder has been progressing for a long time.

The bottom line is that we need legislation to make sure that insurance providers and the medical establishment remain as open to the need for ongoing  treatment  of eating disorders as they are for diseases like diabetes.  In addition, we need the education/continuing education of doctors and therapists to include the latest information about treatment of eating disorders and the incorporation of this information into the required re-licensing of all.

Book Impression: Loving Someone with Borderline Personality Disorder: How to Keep Out-of-Control Emotions from Destroying Your Relationship

Although Loving Someone with Borderline Personality Disorder was published in 2011, I have only recently learned about its existence.   I am very grateful to the therapist who is trained and certified in DBT and who recommended the book to me.  Each time I review sections, I find more insights and will probably update this post as I do.


The author is Shari Y. Manning, PhD, who has been focusing on the treatment of people diagnosed with BPD since 1993.  The book is available in paperback [Guilford Press, 2011] and includes a foreword by Marsha M. Linehan, PhD, who created Dialectical Behavioral Therapy (DBT) and who revealed in the New York Times in June 2011 that she fought BPD, too.  I felt compelled to read the book with the goal of improving my understanding of this diagnosis as well as relating more effectively to a person with the diagnosis.

As with other posts, I've highlighted some of the things I gained from reading the book.  This isn't a true book review. 

Synopsis:  Shari Manning provides us - parents, family members, partners, and therapists - with the tools to help us stay grounded as well as coach our loved ones away from distressing thoughts and harmful behaviors towards living a more productive and serene life.
 
The book's underlying premise - one that I had not heard before and that provides a very different view of what's going on - is found on p.3 of the introduction, and that is,

 "....The truth as you'll learn in this book, is that your loved one is not a terrible person, as much as he or she may have a pattern of some pretty terrible behavior. It's not that your partner or family member wants to create chaos or make anyone miserable. It's that your loved one can't do the right thing, get along with others, or make the choices that seem so plainly correct to everyone else - because he or she doesn't know how. That may seem awfully hard to grasp. Doesn't everyone just have a feel for what it takes to keep a job or a friend, how much is too much to ask of those who care about us, and how to exercise a little self-control! Wasn't your loved one born with the same instincts and the same opportunities to learn how to navigate the world as the rest of us? As difficult as it is to believe, the answer is no. People with BPD were born with an invisible, innate difference that profoundly changed the landscape for them when they were growing up......." 
 
The author cites research that sounds very familiar to those of us who have believed all along that something "else" is going on for those of our loved ones who develop an eating disorder, the reason I began this blog.   Even if the BPD diagnosis is still unclear, the techniques Manning shares are useful and echo in many ways those provided by Dr. Xavier Amador who I have quoted many times from his book, I am Not Sick, I Don't Need Help and from his theory of communication - LEAP - that is summarized here.

 Manning explains the disorder, introduces the reader to dialectical behavioral therapy, provides extensive examples of how to respond - not react!! - to our loved ones through validation, describes the varying behaviors of people diagnosed with BPD, and (as does Amador's) offers important information on how to deal with crises as well as get help (both for us and for our loved one).  I will touch on these topics below.

As readers of my blog know, I don't like the DSM's terminology Borderline Personality Disorder.   Francis Mark Mondimore, MD, and Patrick Kelly, MD, helped me understand and articulate why not on pages 229-231 of their book, Borderline Personality Disorder:  New Reasons for Hope. The terminology can cause one to think the condition is permanent and this isn't necessarily true.  The terminology also can undermine the person's view of himself/herself.  Two strikes before treatment has even begun!!  For some time I've been calling BPD emotional dysregulation disorder because the person with the diagnosis cannot regulate their emotions and the behaviors that evolve from those emotions.  I also want to move away from this terminology because it conjures up what was thought to be an uncurable condition to the point that many therapists won't accept people with this diagnosis as patients.   Better yet, there are more therapists classically trained in this technique (in my opinion critical if someone with this disorder is to be treated well).   I am grateful that this situation has changed.

Recently, I read and provided my impression of Borderline Personality Disorder:  New Reasons for Hope by Francis Mark Mondimore, MD, and Patrick Kelly, MD.  I want to repeat their distillation (as they term it) (p. 251) of this complicated disorder because this paragraph summarizes background that Manning also provides in great detail:

"Borderline personality disorder develops when a child born with extremes of temperament and a biologically rooted difficulty managing emotions encounters a mismatched childhood environment. This mismatch may be quite subtle or quite pathological but is experienced by the child as inconsistent and unpredictable, leading her to develop a damaged sense of self and the expectation that others will continue to be inconsistent, unpredictable, and ultimately unreliable and abandoning. This in turn causes profound emptiness and hopelessness to dominate her emotional life. To cope with her emotional extremes, and her desperate and painful unhappiness, she develops self-destructive coping behaviors like addictions, eating disorders, and self-mutilation. Frequently, these individuals also suffer from biologically based mental illnesses that exacerbate all their other problems and prevent behavioral and psychological treatments from helping them.
....Borderline personality disorder results from an interaction of genetic and other biological factors, inborn temperament, and childhood experiences and is usually complicated by the development of abnormal behaviors and psychiatric illnesses. All these factors require therapeutic attention, often by different professionals using different approaches."

To help other therapists effectively understand and address what Mondimore and Kelly describe above, Dr. Linehan created a five-part  reclassification/subdivision of dysregulation:

• emotional dysregulation
• interpersonal chaos
• behavioral dysregulation
• loss of sense of self
• cognitive dysregulation

 Most of these are self-explanatory and Manning provides excellent and clear examples; however, the one that I struggled to understand was the loss of sense of self.  Manning defines this by saying (p. 22-23)

"....People with BPD often don't have a sense of what they like, what their values are, or who they are....In the moment, they are unable to identify what their experience is -- what they feel in their bodies, what their thoughts and emotions are.  They often judge themselves very harshly and struggle to develop realistic goals for the future.....Not knowing who you are is a byproduct of the extreme emotionality of people with BPD.... They feel lost and empty."

Very simple - perhaps too simple because the issue is much more complicated - examples of how this sense of self can be lost [when compounded] are hearing, as a child, a person tell them that of course they aren't scared (when they are scared to death in that situation); that brussel sprouts taste good (I sure didn't think so as a kid); to quit crying (as though emotions can be turned on and off on a dime); to stop telling lies (the information is not a lie but because the behaviors they are reporting are unbelievable - such as abuse from another family member - the family member squelches the child's need for support), etc., etc.   Manning provides a much more comprehensive discussion of the development of this aspect of the disorder. 

It's important to remember here that the term used by Mondimore and Kelly - mismatched environment - is a very important piece of the puzzle.  Who really knows how this happens in some and not others or why?  And, as time goes on, we may learn that the emphasis falls more distinctly on inherited traits and less on environment.  The fact remains, though, that studied interaction is very important.   

I've discussed in another post about communication (with links to previous posts) why family therapy really helps parents in particular understand that each of their children is unique.  These are my remarks and not those specifically found in Manning's book but the reader certainly finds similar examples. If, for example, your family isn't as demonstratively affectionate (or less so) as your individual child may need it to be because of his/her own temperament, those who take the time to connect with their child(ren) may find unexpected rewards.   Of if your family's culture is to keep a stiff upper lip in times of terrible sadness such as when a family member or even a beloved pet dies, yet the son's or daughter's sensitivity to such events is profound, how do they reconcile - or can they - their feelings with their family's seeming insensitivity.  One might ask, what's wrong with me or think, I do not belong in this family.

The bottom line, once this disorder takes hold,  is that people struggle with varying states of this dysregulation every single day.

Their solutions to deal with the fall-out of this disorder range from cutting to impulse buying or even shoplifting to alcohol and/or drug abuse to running away to shattering a beloved relationship to suicide attempts.  These behaviors can help the person release the pain they are feeling but the release, even though it may feel "good" in the moment, provides negative reinforcement, meaning that it is rewarding in a negative way.

What we all want to happen instead is for the person with this diagnosis to learn to substitute other positive behavior so they can get on with a happy, productive life.  

Marsha Linehan came up with the "how". She developed dialectical behavioral therapy (DBT) to (p. 27)

"....provide an alternative in the form of specific skills that help them maintain good relationships, tolerate distress and survive crises, and learn to use their emotions as the important resource they were designed to be [emphasis mine.]"

Emotions are part of what makes us human.  Manning distinguishes three emotional tendencies of those with emotional dysregulation:

• extreme emotional sensitivity
• emotional reactivity (no pausing; just acting) 
• slow return to baseline - perseveration

Imagine the physical and psychological energy this must consume! 

So, you might ask, where do I come in?  What can I do without trying to take on the role of a therapist for which I am not qualified?  How can I avoid fragilizing my loved one [Manning's term and a descriptive word!].   As family members, we want to encourage and praise our loved one's growing competence as they employ the principles of DBT.   Believe and remember that this competence can develop.  And we also need to understand, according to Manning, where our loved one is in the process so we can provide appropriate support as needed.  She provides tools to help us accomplish this, too.

Your task is to (p. 48)

 "Understand the tasks of emotional regulation that your loved one [and you!] needs to be able to perform."

Think about the above statement for a moment.  How helpful can you be if you, too, are emotionally reacting to whatever it is your loved one has said or done.

How do you help your loved one [and you] (p. 48):

• reorient attention
• Up-regulate or down-regulate our physiological arousal
• Stop ourselves from doing whatever it is our emotion and mood tell us to do
• Have a life with goals in it that are independent of emotion

 To cope with the ups and downs of living, everyone needs to put these four points into action.   Throwing temper tantrums as a two-year-old or losing one's temper as an adult are not effective ways (well, maybe they can be but at what cost in the long run if the person perpetuates this behavior) to get what one wants. 

As the person who wants to maintain a relationship with your loved one, you can take the steps provided in this book that are the basis for an extensive discussion, especially about validation,  and Manning provides exercises and examples to help you do this.  To elaborate on the concept of validation, Manning incorporates Linehan's six levels of validation and I've provided a link to an article about the levels that also appeared in Psychology Today.  As I've said, I encountered some of these in Amador's book.  I also learned aspects of this in a mediation course.  Dispute resolution includes some of this as well.

Here are the suggested steps for you to take to help your loved one:

(p. 51)

1. Assess: ask [objectively] what has happened.
2. Listen actively; don't contradict, judge, or say your loved one is overreacting.
3. Validate: find something in what happened that makes sense and is understandable, that you can related to; say what that is.
4. Ask if you can help, not to solve the problem, but to get through the moment.
5. If your loved ones says no, give him or her space and remember the emotions of emotionally vulnerable people last longer.

 Having gotten through the first three of these steps [the first three because I had not been coached in steps 4 and 5], I had asked (so as to put the responsibility onto the person needing to solve the problem),  "what are you going to do about it?"

Thanks to Manning, I've come to understand - going back to the five areas of dysregulation - that those with BPD may not know what to do about it.  This can be shocking.  Accept that just maybe your loved one needs a complete retraining or even an introduction to problem-solving skills in a variety of settings  that are applied to many aspects of life to make a successful go of it.  If you wonder about the veracity of this possibility, you can arrange for neuropsychological testing that will identify deficits that need attention.

So, what are effective problem-solving steps?  Manning reviews seven suggested steps and also enhances the discussion on Active-Passivity (getting someone else to solve the problem).  (p. 138):

1. Define the problem: What are you trying to solve here?  What are your goals?
2. Analyze the problem: What are the facts about the problem and/or the problem situation?
3. Generate solutions: Purely brainstorm.  Don't exclude any ideas because they are ridiculous or unrealistic.
4. Choose a solution: Narrow down the solutions to the one you think will best get you to your goal, will solve the problem, and is the most realistic to implement.  [Even this can be quite a bit of work for your loved one.]
5. Troubleshoot the solution: What could get in the way of achieving the goal?  How will you overcome these obstacles?
6. Put the solution into action:  Try the solution.
7. Evaluate the solution:  Did it work?  If not, choose another solution from the "generate solutions" list and implement it.

In addition to problem solving and Active-Passivity, the second section of the book addresses other faces -- the experiences -- of BPD; for example, self-invalidation, conflicting feelings, shame,  and apparent confidence.

There's a wrinkle that Manning defines as she examines the concept of apparent confidence.  The easiest and simplest way to describe this is to think of a dog learning to sit.  In your home or with you in your backyard, your pet doesn't have many distractions and after some practice (with treats), sits when asked.  So, off you go to the pet store with your companion on a leash only to find that your pet doesn't listen to your sit command -- doesn't seem to listen at all --  when other dogs and people are present in what to your pet is a new -- and often noisy -- environment.

The same disruption can occur for those with BPD.  In a one-on-one conversation or exercises, what comes next having taken these steps appears to be simple and easy for the person to tackle.  But add many more people, some of whom might be viewed as being judgmental, noise, the stress of believing that the "right" decision needs to be arrived at, and so forth and suddenly everything seems impossible. 

Manning writes, (p. 150)

People with BPD seem to have more trouble generalizing behaviors than others largely because, as with so many of their other problems, emotions interfere with learning....If your loved one seems unable to do something in one context that she can do in another, it's not that she isn't trying hard enough, it's that the behaviors literally are not in her repertoire of behaviors for that specific environment.

As you might imagine, shame figures hugely in all of this, too.  Going along day after day under these circumstances is incredibly difficult.

Once you are aware of and have accepted all this information, the next step is to take action or depending on your relationship or energy level,  to find a trained/certified life skills coach.

Absorbing and putting into practice the information that Manning includes in her book takes time, hard work, practice and thoughtful communication on the reader's part.  I'm participating in some training sessions, too.

Manning provides the reader with lists, examples and exercises to help you respond effectively.  In fact, she suggests that you xerox pages and have them handy.  One table is on p. 72 and lists the Five Steps to Responding Effectively to Borderline Behavior:

1. Regulate your own emotion.
2. Validate [yourself] (do this at every step).
3. Ask/assess.
4. Brainstorm/troubleshoot.
5. Get information on your role (if any) and what you can plan on hearing about the outcome.

Taking care of oneself is important, too.  Manning provides suggestions in another short but effective table about identifying and communicating limits.  Boundaries often is another term people use to describe limits.  All these points need practice.

Hopefully, your loved one is also working at least one hour or even two hours a week with a competent certified DBT therapist.   Expect this therapy to last at least six months, possibly a year, and to eventually include group work with others who are motivated to change.   What I mean by competent is someone who has taken the training and applies the training completely rather than inserting aspects of it into another form of therapy and who recertifies often, possibly once a year.  Your role is to support the work that your loved one is doing as he/she applies his/her learning to the real world.  Again, your role is NOT to be the therapist.

If your loved one also has an eating disorder, find a therapist who is willing to work with the DBT therapist to enhance the value of ongoing treatment.  Addition here:  remember, that some with BPD will deliberately create the idea of good therapist/bad therapist and interfere with his/her own recovery as a result.  This manipulation often is subconscious so if another therapist is added to the equation, s/he and the BPD therapist MUST work together and inform their patient that they are working together.  In addition, ask the DBT therapist if s/he seeks regular guidance from another DBT therapist in order to stay grounded and not drawn into the whirlwind that someone with BPD can create.

Part III of the book focuses on the practicalities of dealing with crises and getting help. Here Manning thoughtfully helps the reader reflect on his/her feelings, experiences and actions -- fear, guilt, despair -- leading up to this point.  She provides an in-depth section on your loved one's potential for self-harm as well as suicide and in addition examines the pros and cons of inpatient versus outpatient treatment.  Finally she provides the names of other resources including organizations developed to provide help to families and those diagnosed with BPD.

In summary and to close, here's a quote from the "Praise for" section of the book by the parents of an adult child with BPD.  Jim and Diane Hall who are also family educators for the National Alliance on Mental Illness (NAMI) and the National Education Alliance for Borderline Personality Disorder (NEA-BPD) state:

The title says it all!  Dr. Manning explains what she has learned about the true nature of BPD from the experts themselves -- those who have the disorder.  She shows family and friends how our instinctive responses to the crises associated with BPD are frequently ineffective or even harmful, and illuminates what we can do differently, providing practical, incisive, step-by-step guidance.  The book helps readers understand their complicated relationship with a person with severe emotion dysregulation.  It provides valuable tools for dealing with self-harm, suicidality, and hospitalization decisions.  Of crucial importance, Dr. Manning clearly affirms that BPD -- and the pain experienced by those who suffer -- is real.  We highly recommend this book.

Activism for Insurance Reform

The Eating Disorders Coalition and the National Eating Disorders Association (among others) are actively encouraging people to become involved in a national lobbying effort to reach state and national legislators who have the power to introduce legislation about Eating Disorders.

As many of us parents know, it's difficult if not impossible to obtain adequate insurance coverage for treatment of eating disorders, a process toward recovery that can take 5-7 years if addressed early enough.  If not identified/diagnosed and then treated quickly and effectively, eating disorders can and do simmer along for years, disrupting the lives of those affected.

From the NEDA Website:

"Eating disorders are serious, potentially life-threatening conditions that affect a person’s emotional and physical health. They are not just a “fad” or a “phase.” People do not just “catch” an eating disorder for a period of time.  They are real, complex, and devastating conditions that can have serious consequences for health, productivity, and relationships. 
People struggling with an eating disorder need to seek professional help.  The earlier a person with an eating disorder seeks treatment, the greater the likelihood of physical and emotional recovery."

Recently, Leah Dean of F.E.A.S.T. wrote a piece outlining how to be an effective advocate drawing upon a template developed by the AIDS Advocacy Movement.  You can find her post here. 

Just this week another post appeared in the blog of the law firm Kantor and Kantor of California, a firm that has successfully represented families whose loved ones have insurance policies but the insurance companies involved have been reluctant to provide adequate coverage.  This situation is changing!

The blog post describes the work by Annie Seal of Missouri who advocates for insurance reform and who, through very hard work, obtained support for her work from the Missouri legislature.  Here is the story of how she accomplished her goals.  The Missouri site provides a draft of a letter of support for those who wish to advocate for change within their own state.

And, with great success.  Missouri SB 145 has been passed into law!

These two women have provided a template for change.  We can make a difference!!

Against Their Will - Another Essay re the Challenge of Treatment Refusal

The on-line edition (July 22, 2012) of Psychology Today carries an article by Emily Troscianko titled, "Anorexia and the Right to Die".

This discussion again evolves from the decision by Justice Peter Jackson previously discussed here on my blog.  


Emily's position is the same reached by several of us; that is, the brain of one with severe starvation syndrome resulting from anorexia leaves the mind incapable of rationally making the profound decision to end one's life.  It behooves scientists/doctors/researchers/caregivers to find a way to re-feed the individual and from there to assist that individual to reconnect with life and recovery.

The how is another question......

Against Their Will - A P.S. with thanks to an article by Jeneen Interlandi in the New York Times Magazine, June 24, 2012

Today's New York Times Magazine (Sunday, June 24, 2012, pp. 25-29, 38, 46-7) carries an article written by Jeneen Interlandi about the journey their family took through emergency rooms, psychiatric wards, psychiatric courtrooms, and in their case jails.

The title of the article, linked here,  A Madman in Our Midst, grabs the attention of the ordinary reader in a way that another title might not.  I know I cringed at the title because it exacerbates stigma but I applaud Jeneen and her family for making this story public and for incorporating so much information about the history and the status of the mental health care system in our country, in some cases state by state, as well as the arguments pro and con about involuntary commitment and treatment.

I think Jeneen Interlandi's article highlights and vastly expands upon what I wrote in a previous post, "Against Their Will - Treatment for ED and Other Brain Disorders."  The details she provides about the struggles her family had with the ethics of all of this reflect back to Dr. Tomas Silber's article, "Treatment of Anorexia Nervosa Against the Patient's Will: Ethical Considerations."

As Ms. Interlandi writes and as many of us caught in this cycle will tell you, "the absurdity of this situation wore on us.  How was anyone with a diagnosed mental illness supposed to recover through a revolving door of emergency rooms, short-term psych wards and [in her father's case] jail?"

If you are interested in what's happening across the country, take a look at the website of the Treatment Advocacy Center, the purpose of which is to "eliminate barriers to the treatment of mental illness" and which is lobbying for broader involuntary commitment standards.  Just released by the Center is A Guide for Implementing Assisted Outpatient Treatment, that [from the website] "includes 64 pages of practical information and instruction and appendices containing more than 30 sample forms and other documentation. For links to the guide, its appendices and samples, click here.

Change is needed for those who need to gain assured (meaning at least 6 months), not short-term, stability,  in a safe place before consideration of next steps.  As an advocate for those with entrenched eating disorders, I believe this placement with guided nutrition and therapy followed by a step-down program, must be available and is especially necessary.

Against Their Will - Treatment for ED and other Brain Disorders

Yesterday, while exploring the links that accompanied Laura Collins' recently posted presentation at the International Conference on Eating Disorders (ICED) in May 2012, I noticed a link to an article by Tomas J. Silber, MD, MAAS titled Treatment of Anorexia against the Patient's Will:  Ethical Considerations.

Silber's topic and the outcome of this kind of decision, referred to here in Arizona as Title 36, has continued to be a thorn for me because I and my loved one's team have made the decision to utilize this law several times as a last ditch effort to save her life.   It's a wrenchingly difficult decision to make for reasons that Silber discusses.  In all cases but one (and a month later she and we suffered the consequences of the judge thinking she was competent and could make it and at that point Title 36 was invoked) approval was granted, the most recent being almost six months ago.   Only over the past two months has she begun to re-gain (the word is used to illustrate that once upon a time she was at a healthy weight and needs to return to it) the weight through balanced nutrition so that she (her brain/body) is able to do the work ahead.  This initial process - to reach stability - can take six months to a year!  She's never been able to do this for a variety of reasons.  The most recent step is an attempt to give her another opportunity.

Yesterday, a well-educated scientist who is knowledgeable (because she is also in recovery) about eating disorders, took a thoughtful look at the recent situation in Wales in which a judge, at the urging of the care team, has ordered forced feeding for a woman who had given up the fight and whose immediate family agreed with her decision.  The consequent at times thoughtful at times emotion filled discussion has raised, I think with great value, the topic of eating disorders, specifically starvation eating disorders to public consciousness at a much higher level than before. [The post referred to is no longer available on line.]

We need to keep this conversation going.

The bottom line, for me, that so many of us continue to state is that nutrition must come first, for without a return to nutrition, the brain and the body don't have a chance against a starvation eating disorder.  And that return requires stability for quite some time afterwards, too.  And, this is only the beginning.  The hardest part is ahead for this young woman and for others who need to overcome entrenched feelings and behavioral patterns. 

So, back to Dr. Silber's article which takes a look at the ethics of treatment against a patient's will.  He includes in his introduction the point, which is well-known in the eating disorder community whether treatment occurs at home or in a hospital or in a residential setting, "....In many, if not most, instances of treatment for AN, patients receive some form of treatment against their will."(p. 283)  One only needs to read Harriet Brown's important book Brave Girl Eating to learn that even at home getting a child in the clutches of a starvation eating disorder to eat isn't the simple matter of just placing a plate in front of her/him and pleasantly asking him or her to eat.  Rather, it's a matter of loving yet firm persuasion met with screams, and thrown and/or spit out food, and so forth until the child is re-nourished enough to start to participate in the process.

Silber goes on to say,  "....The situation can become even more difficult to address once patients reach the age of majority." (p. 283)

This is the situation for the woman in Wales.  This is the situation for those entrenched in eating disorders.  This is the situation for my family member.

As he notes, the patient's entire team (if s/he is lucky enough to have one) may not reach agreement on how to proceed and often the decision must be taken on by another family member or a doctor or ultimately a judge.

To approach a decision, Silber proposes what he calls Justified Paternalism (JP) (p. 284 of the article published in Adoles Med State Art Rev. 2011;22(2):283-8,x.) and he believes that JP must be wise, meaning that one must realize one violates a moral rule and second that there must be a compelling reason.

He refers to two papers the conclusions of which are similar to Title 36 with the addition of "c)the person is likely to be thankful for the treatment at a later time,.... and "d)the intrusion is generalizable, in the sense that those supporting it would wish the same on themselves."

[I actually wonder if the judge read Silber's paper because it's so compelling in its pro and con positions, particularly in regards to eating disorders.]

He next discusses autonomy and society's drift towards leaving decisions to the patient.  He recognizes during this discussion that someone with an eating disorder is quite able to present pseudo competence, therefore meeting standards for competency as also outlined in Title 36.

Yet, as many of us in the trenches and as Silber then goes on to recognize, those with a starvation eating disorder aren't fully competent; their brains and their bodies have been compromised and will remain so until they are renourished and stabilized in that renourished state.  He also recognizes the supreme importance of involvement of the patient's family and/or social network -- the team that Dr. Janet Treasure and others advocate.

Silber presents research that underscores his arguments and also highlights the difficulty of working with teenagers and more particularly adults, and closes his paper with an emphasis on values and the importance of how the person perceives herself/himself to be respected during the treatment process.  In other words, as he writes, "....At the end it is always values that underlie and strengthen the good work.  These include fundamental respect for the person, even as liberty is restricted; beneficence; and truth telling." (p. 286)

I have heard parents say that they and their family member(s)  are regarded as "less than"  in these kinds of settings and a balance must be found so that all concerned believe they are participating in the effort to help their family member recover.  Silber speaks to this important need.

Silber concludes, and I hope that the prolonged treatment the judge has ordered for the young woman in Wales and for others remanded to treatment evolves into, "....Treatment interventions for eating disorders need to include not only the biopsychoscocial and spiritual components that have enriched the field over the years, but also need to incorporate a philosophical dimension that takes into account a reflective understanding of patient autonomy; patients' rights; obligation to protect; respect for persons; right to treatment refusal; and, last but not least, justified paternalism and an expanded concept of autonomy." (p.287)

In closing, I want to thank the author known as Extra Long Tail and Laura Collins for their recent posts.  The information provided I am sure, with dissemination, will improve the care of others who have starvation eating disorders, a term that I came across last night in a book by Doreen A. Samelson, ED.D., MSCP titled Feeding the Starving Mind (New Harbinger Publications, Inc., 2009).